News – Page 16 – Muscular Dystrophy Canada

Rachel Andrews Story

It’s been a little over a year since I sat in a Neurologists office, with my husband by my side, and heard the words “I believe you have Facialscapulohumeral Dystrophy (FSHD)”.

My first response was, “say what?” It’s a mouthful for sure, but I’m fortunate my failing facial muscles are still able to say it.

Hello, my name is Rachel and I wanted to share my story with you because Muscular Dystrophy has impacted my life since well before my diagnosis. And, I believe more research and education will ensure Canadians like me don’t continue suffering with undiagnosed symptoms.

CADTH REVIEW AND SPINRAZA

Spinraza decision signals the need for a Canadian Rare Disease (or Orphan Drug) Framework

The drug review and approval process in Canada is complex. Many agencies from Health Canada, to Canadian Agency for Drugs and Technologies in Health (CADTH) and Institut national d’excellence en santé et en services sociaux (INESSS), to the Pan-Canadian Pharmaceutical Alliance and each individual provincial and territorial governments all share in the decision-making.

MDC Welcomes Daria Wojtal as Director of Research

We are pleased to announce that Daria Wojtal has joined Muscular Dystrophy Canada as the new Director of Research. Daria comes to us from the Hospital for Sick Children and the University of Toronto, where she worked under the leadership of Dr. Ronald Cohn on her PhD in developing CRISPR gene editing technology for the treatment of neuromuscular disorders.